Blogging can be challenging at times. Kind of like writing a book. I have, at times, come here to post and have nothing to post about. It's like a writers block. I will close my laptop, unload the dishwasher, then, it will hit me on what to post. I like to post about a lot of things. I have opened up to the blogging world, invited everyone into my home, my life, my heart.
My mother always told me that with my interesting life, I should write a book. Never had time, too busy raising a large family. Who knows how to write a book?, I would think. Certainly not me. Writing a book would be hard to do, I would think. This may not be a leather bound book, but, it's a book all the same.
I'm a big, big fan of the TV show Survivor. Have watched it since day one. In this show, they have challenges. These challenges leave the contestants exhausted, sweaty and at times, injured. I often think of myself on the game Survivor. However, that is where I stop. In the end, someone wins 1 million dollars. No one is going to hand me a check, made out in my name, for 1 million dollars at the end of my "game".
At the end of this "game", there will be no big TV Season Finale. There will be no celebration. The motto of the TV show Survivor is Outwit, Outlast, Outplay.
I can honestly say, at my end, I will have Outwitted, Outlasted and Outplayed this game of Early Onset Familial Alzeiemer's Disease.
Ha!!
Husband's last camping trip
Saturday, April 7, 2012
Friday, April 6, 2012
You've cone a long way, baby
Survived my first order with a Medical Supply Store. I had called Humana/Medicare to ask if they would pay for a lift to be installed on my car for husband's chair. Unfortunately, they do not. But, said they would pay for a wheel chair. Was unaware that you need a prescription for said wheelchair. So, I learned how to order, what steps to take and, now that we're in the system, next time will be easy enough. The wheelchair will be delivered today.
I have learned that when you need to contact someone in the medical field, always, always tell them you've never had the "opportunity" to be in this situation, please bear with me, I have questions. In my case, it has opened doors for me and I have learned a lot.
When your spouse (or any loved one) is dealing with a terminal illness, the surviving family member suddenly becomes chief cook and bottle washer. Everything is put on that person. Everything.
What I have learned in the past 2 years, is incredible. I surprise myself at times. It feels good to accomplish things I never thought I would have to face.
After everyone had gone to bed last night I got to thinking over the past few years. What we have faced and what we are facing now. It all started with searching on the internet. Then, it was to our primary Dr. Next stop was Neurology. A battery of tests lasting 4 months. The day I will never forget, Diagnosis Day. And, just 2 weeks ago, Genetic Test Results.
It's been quite a journey these last few years. We have our answers, we have a diagnosis. We now live with this hovering over our heads. I wish things were different. I wish I was wrong about all these signs and symptoms. I wish he wasn't going to die.
I've come a long way. If you were to tell me 5 years ago what I'd be facing now, why, I would put myself into a corner and turn inward. Funny how life is though. The sun comes up and goes down the same way it did before this nightmare began. Life goes on. I now live a different life. I deal with life & death each and every day. I watch as my husband slowly looses his life. I will experience my youngest child leave the nest in September. He will, in all likelihood, never see his dad alive again, once he leaves.
When this is over with and I am left to deal without a husband, the sun will come up and go down same way it has has done for thousand of years.
I have learned that when you need to contact someone in the medical field, always, always tell them you've never had the "opportunity" to be in this situation, please bear with me, I have questions. In my case, it has opened doors for me and I have learned a lot.
When your spouse (or any loved one) is dealing with a terminal illness, the surviving family member suddenly becomes chief cook and bottle washer. Everything is put on that person. Everything.
What I have learned in the past 2 years, is incredible. I surprise myself at times. It feels good to accomplish things I never thought I would have to face.
After everyone had gone to bed last night I got to thinking over the past few years. What we have faced and what we are facing now. It all started with searching on the internet. Then, it was to our primary Dr. Next stop was Neurology. A battery of tests lasting 4 months. The day I will never forget, Diagnosis Day. And, just 2 weeks ago, Genetic Test Results.
It's been quite a journey these last few years. We have our answers, we have a diagnosis. We now live with this hovering over our heads. I wish things were different. I wish I was wrong about all these signs and symptoms. I wish he wasn't going to die.
I've come a long way. If you were to tell me 5 years ago what I'd be facing now, why, I would put myself into a corner and turn inward. Funny how life is though. The sun comes up and goes down the same way it did before this nightmare began. Life goes on. I now live a different life. I deal with life & death each and every day. I watch as my husband slowly looses his life. I will experience my youngest child leave the nest in September. He will, in all likelihood, never see his dad alive again, once he leaves.
When this is over with and I am left to deal without a husband, the sun will come up and go down same way it has has done for thousand of years.
Thursday, April 5, 2012
Familiar Feelings
We got husband's chair yesterday. It's not a scooter, but one of those wheel chairs that go places. I think they call it the Hover Round? Whatever the name, it is wonderful. Husband will use it in the house. I cannot lift it, way too heavy. I have to find a place that will install something on the back of my car so I can transport it. Trouble is, I don't have that kind of money to pay for it. Will have to let God work in that area. It would be so nice to have it with us when we do go places. No more walking for husband.
Husband has been in good spirits. I thought he would be upset by another change, but, he has seemed to accept it. I honestly think that once his dad came around, he too came around.
There was a lot of seizure activity in the night. Hard for me to sleep. There were a few days last week that he slept OK. No seizures to speak of. Now, all of a sudden, they have come back stronger than before. Oh, how I hate this. His body is being ravaged by these seizures.
I showed father in law the genetic test results. He read it, gave it back to me and said, "I can't read anymore. I don't want to see anymore. And I have to accept it. I'm just too sad right now."
Last night I had this feeling. It was a familiar feeling. I have had it for over 2 years now. Then, it suddenly dawned on me what it is.
It's the feeling of a broken heart.
Husband has been in good spirits. I thought he would be upset by another change, but, he has seemed to accept it. I honestly think that once his dad came around, he too came around.
There was a lot of seizure activity in the night. Hard for me to sleep. There were a few days last week that he slept OK. No seizures to speak of. Now, all of a sudden, they have come back stronger than before. Oh, how I hate this. His body is being ravaged by these seizures.
I showed father in law the genetic test results. He read it, gave it back to me and said, "I can't read anymore. I don't want to see anymore. And I have to accept it. I'm just too sad right now."
Last night I had this feeling. It was a familiar feeling. I have had it for over 2 years now. Then, it suddenly dawned on me what it is.
It's the feeling of a broken heart.
Wednesday, April 4, 2012
A new ride
My father in law, who has been in denial for over two years, purchased a used electric scooter for husband yesterday. We may have to buy a battery for it, but, otherwise, it's is perfect condition. Of course, I don't know if we can use it when we go out, it may be too heavy for me to lift. I may look into getting a lift and stand for it, for my car. I see them on other cars, but, just don't know how expensive it can cost.
That was a loving gesture. He has done a turn around. Something I had always wanted. We are getting closer, which is nice. I know he is hurting. My heart goes out to him.
And, this scooter couldn't have come at a better time. Like I said previously, husband legs are practically nothing now. No movement, no bending.
Husband is excited about this scooter. Happy even. We pick it up this morning.
I woke in the night to find husband having a seizure. It lasted longer than normal. I laid there, counting the seconds. It lasted for about 45 seconds. Longest one to date. The others would last only about 5 seconds. I hate waking up in the middle of the night and experiencing husband having a seizure. It's dark, everyone is sleeping, so quiet in the house and to witness this, well, it's scary.
Husband seems OK this morning. Tired looking, a little drawn, but OK.
Off we go to get his "new ride", as Jack named it. What a loving gesture by his dad. Husband is happy about it. Who can complain?
That was a loving gesture. He has done a turn around. Something I had always wanted. We are getting closer, which is nice. I know he is hurting. My heart goes out to him.
And, this scooter couldn't have come at a better time. Like I said previously, husband legs are practically nothing now. No movement, no bending.
Husband is excited about this scooter. Happy even. We pick it up this morning.
I woke in the night to find husband having a seizure. It lasted longer than normal. I laid there, counting the seconds. It lasted for about 45 seconds. Longest one to date. The others would last only about 5 seconds. I hate waking up in the middle of the night and experiencing husband having a seizure. It's dark, everyone is sleeping, so quiet in the house and to witness this, well, it's scary.
Husband seems OK this morning. Tired looking, a little drawn, but OK.
Off we go to get his "new ride", as Jack named it. What a loving gesture by his dad. Husband is happy about it. Who can complain?
Tuesday, April 3, 2012
The Flip Side
While most of my days are not so funny, there is always a flip side to anything. Take for instance, Saturday.
As I said earlier, on Saturday morning, after we got back from Wal Mart, husband went to bed. I was doing the heavy cleaning.
Pat & Christine had given me some pretty artificial trees when we moved in here. They may be artificial, but they look so real. They had been in their garage for a few months. The dust on them was bothering me, so I had the bright idea to put the one in the living room in my shower to rinse off the dust. It worked beautifully. I stood the tree in the bathroom to dry and finish my cleaning.
A few hours later husband woke up. When he came into the living room, he had a funny look on his face. I asked him what was wrong, he said, "There's a tree in the bathroom. Why is there a tree in the bathroom?" At first, I thought he was hallucinating, then it dawned on me. I had left the tree to dry in the bathroom. Poor guy, that almost did him in.
I had to laugh, he finally laughed. Kristen came home and I asked her to get the tree from the bathroom. She looked at me as if I had lost my mind and said, "Go get the tree is the bathroom? Yeah, right Mom. Do you need a break?"
Rule Number One: Never, ever leave tree in bathroom with an Alzheimers husband. Why, you'll scare the you know what out of them!!
As I said earlier, on Saturday morning, after we got back from Wal Mart, husband went to bed. I was doing the heavy cleaning.
Pat & Christine had given me some pretty artificial trees when we moved in here. They may be artificial, but they look so real. They had been in their garage for a few months. The dust on them was bothering me, so I had the bright idea to put the one in the living room in my shower to rinse off the dust. It worked beautifully. I stood the tree in the bathroom to dry and finish my cleaning.
A few hours later husband woke up. When he came into the living room, he had a funny look on his face. I asked him what was wrong, he said, "There's a tree in the bathroom. Why is there a tree in the bathroom?" At first, I thought he was hallucinating, then it dawned on me. I had left the tree to dry in the bathroom. Poor guy, that almost did him in.
I had to laugh, he finally laughed. Kristen came home and I asked her to get the tree from the bathroom. She looked at me as if I had lost my mind and said, "Go get the tree is the bathroom? Yeah, right Mom. Do you need a break?"
Rule Number One: Never, ever leave tree in bathroom with an Alzheimers husband. Why, you'll scare the you know what out of them!!
Monday, April 2, 2012
The Chosen
Church was wonderful yesterday. The message Pastor gave had me spellbound. It was so powerful. Our message was about Christ's last few days here on earth. Right up to the end when, as Pastor said, "He took his last breath and died." The sadness I felt for all His suffering. Tears rolled down my face. I was so moved by Pastor and his message.
As we were walking out to the car, husband said, "Wow, that message was good." He not only remembered the message, but, understood it as well. How Great Thou Art.
The rest of our day was spent quietly, at home. I watched an old movie on TV. Husband rested on the bed.
Husband's memory and confusion are a constant reminder of just how gravely ill he is. His legs are almost completely stiff now. He has lost control of his legs. They don't move at all. Just a shuffle, labored shuffle. I have to get him in a wheel chair. But first, I have to get him convinced he needs to be in a wheel chair. That's the difficult part. I looked at his legs last night. They are very thin, almost look like sticks now. It's not pretty.
There have also been loss of bodily functions. It's a daily problem now. I offered some Depends, but, he said no. Will wait until he's ready. Wanted to let him know I have them. He seemed surprised that I had them, stashed in the closet. I said, "Well, just in case, we have them." He seemed satisfied, for now.
Every morning, I take stock of where we are now. Every morning, I make a decision. Some are good decisions, some, not so good. Like offering your husband Adult Diapers. How fun is that?
This journey is hard. I wouldn't recommend it to anyone. It's also what God has chosen for me. I have to walk it, I have to live it. Remembering that God chose me for this, has made me more humble. He knows I can do it. I am chosen. I hope to make my Lord and Savior proud.
As we were walking out to the car, husband said, "Wow, that message was good." He not only remembered the message, but, understood it as well. How Great Thou Art.
The rest of our day was spent quietly, at home. I watched an old movie on TV. Husband rested on the bed.
Husband's memory and confusion are a constant reminder of just how gravely ill he is. His legs are almost completely stiff now. He has lost control of his legs. They don't move at all. Just a shuffle, labored shuffle. I have to get him in a wheel chair. But first, I have to get him convinced he needs to be in a wheel chair. That's the difficult part. I looked at his legs last night. They are very thin, almost look like sticks now. It's not pretty.
There have also been loss of bodily functions. It's a daily problem now. I offered some Depends, but, he said no. Will wait until he's ready. Wanted to let him know I have them. He seemed surprised that I had them, stashed in the closet. I said, "Well, just in case, we have them." He seemed satisfied, for now.
Every morning, I take stock of where we are now. Every morning, I make a decision. Some are good decisions, some, not so good. Like offering your husband Adult Diapers. How fun is that?
This journey is hard. I wouldn't recommend it to anyone. It's also what God has chosen for me. I have to walk it, I have to live it. Remembering that God chose me for this, has made me more humble. He knows I can do it. I am chosen. I hope to make my Lord and Savior proud.
Sunday, April 1, 2012
Questions for My Lord
April 1st today. Where did March go? Actually, I don't know where this year has gone. Time is going by so fast. Too fast, I think.
Husband is doing so-so. The more lucid moments are fleeting now. He seems to be in his own world most of the time now. Pleasant (mostly), but, not there.
He wanted to go to Wal-Mart yesterday. I had a lot to do in the house, but, took him anyway. When we got home, he said, "I have to lay down. I can't go on." He slept for 3 hours. When he woke up, he was very confused, not really saying much, just continued to lay on the bed and stare. He was quiet. After awhile, he came around and was able to eat a good dinner.
Around 6:30, he went outside in the back. We have a sliding door leading off of the living room into the back yard. The dogs went with him. After about 10 minutes or so, I glanced out the sliding door to see what he was doing. He was sitting on the bench near the patio. Snowball was on his lap. He was just staring at nothing, petting little Snowball. He looked so sad and pitiful, sitting there. I choked a little, looking at him.
He came in and I noticed him having a lot of tremors. I suggested he take a nice hot shower, then, relax. When he came out of the shower, he told me he forgot to use the shower seat, "but, I didn't fall or anything," he said.
We usually like to go to church on Saturday evenings. Since we've moved, I just can't seem to get it together to go on Sat night. So, we will go to the 11:15 AM service today. Always, when I come home from church, I feel so refreshed, ready for a new week. Ready for anything. "I can do this," I always think, driving home from church. By the middle of the week, I find myself saying a silent prayer of "Help us Lord."
We have no more Dr appointments until his EEG in May. We see Dr A in July. Dr A explained why we go every 6 months. He wants to see how the disease is progressing, judging how much time husband has left.
Husband just woke up and said he had a nightmare. Had to get out of bed, he said. He is starting in on the questions. We go through this every morning. Questions that don't make sense to me, but, questions just the same. It always starts out like this. The questions seem to ease off by mid morning. By then, he is asleep again.
Questions. I have my own questions, however, I don't speak them out loud. These questions rattle in my head, all day long. My questions cannot be answered, at least not in this life. One day I will have my answers. When I go before My Lord, I will ask Him. He has all the answers.
The first thing I will ask is, "Why?"
Husband is doing so-so. The more lucid moments are fleeting now. He seems to be in his own world most of the time now. Pleasant (mostly), but, not there.
He wanted to go to Wal-Mart yesterday. I had a lot to do in the house, but, took him anyway. When we got home, he said, "I have to lay down. I can't go on." He slept for 3 hours. When he woke up, he was very confused, not really saying much, just continued to lay on the bed and stare. He was quiet. After awhile, he came around and was able to eat a good dinner.
Around 6:30, he went outside in the back. We have a sliding door leading off of the living room into the back yard. The dogs went with him. After about 10 minutes or so, I glanced out the sliding door to see what he was doing. He was sitting on the bench near the patio. Snowball was on his lap. He was just staring at nothing, petting little Snowball. He looked so sad and pitiful, sitting there. I choked a little, looking at him.
He came in and I noticed him having a lot of tremors. I suggested he take a nice hot shower, then, relax. When he came out of the shower, he told me he forgot to use the shower seat, "but, I didn't fall or anything," he said.
We usually like to go to church on Saturday evenings. Since we've moved, I just can't seem to get it together to go on Sat night. So, we will go to the 11:15 AM service today. Always, when I come home from church, I feel so refreshed, ready for a new week. Ready for anything. "I can do this," I always think, driving home from church. By the middle of the week, I find myself saying a silent prayer of "Help us Lord."
We have no more Dr appointments until his EEG in May. We see Dr A in July. Dr A explained why we go every 6 months. He wants to see how the disease is progressing, judging how much time husband has left.
Husband just woke up and said he had a nightmare. Had to get out of bed, he said. He is starting in on the questions. We go through this every morning. Questions that don't make sense to me, but, questions just the same. It always starts out like this. The questions seem to ease off by mid morning. By then, he is asleep again.
Questions. I have my own questions, however, I don't speak them out loud. These questions rattle in my head, all day long. My questions cannot be answered, at least not in this life. One day I will have my answers. When I go before My Lord, I will ask Him. He has all the answers.
The first thing I will ask is, "Why?"
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